The View from Below

Santorini

“One sees great things from the valley, only small things from the peak.”

― G.K. Chesterton

Pent house suites, mountaintop lodges, castles atop grand cliffs . . . the allure of high places is something we all crave to experience at one point or another.   Top level retreats seem to indeed be sought out destinations of choice—the very essence of luxury.

When traveling to Santorini, Greece—John and I chose the breathtaking town of Oia to call home for the duration of our stay.  The idea of staying in a traditional cave house carved inside volcanic earth was in and of itself—thrilling to the core.  Add the fact that it’s panoramically set 1000 feet above the Aegean Sea—well, let’s say the feeling was nothing short of Utopia on steroids.  The views coupled with the meandering narrow paths along the steep cliffs proved that though Oia is certainly not for the faint of heart, it is most definitely the choice destination for anyone seeking ultimate beauty . . . on high.

Recently, I’ve hit a low point on this pilgrimage called cancer, a point where time seems skewed, warped in fact.  One moment everything appears to be moving in slow motion, then BOOM—time seems to be running full speed ahead.  As if by magical “clockwork,” my emotions follow suit, stuck in vacillation-mode.  One minute, I’m eager to have chemo in the rear view mirror, while a split second later I become crippled with anxiety about moving beyond chemo onto the next phase of treatment—desperate to stop time in its tracks.

Just hours from now, I’ll be infused with my final dose of Taxol, followed by 4 rounds of dose-dense A/C every other week— that lovely chemo cocktail better known as the “Red Devil.”  How pleasant.  Not exactly a happy hour beverage of choice.  It would seem anything with the word devil tied into its nickname . . .  can’t be good.  As appealing as a free Brazilian wax may seem, if it means having someone gown up to stick a syringe of bright red poison into your vein . . . well, I guess I would have to say hair isn’t such a hardship.  All joking aside, as eager as I am to be done with chemo, the thought of what awaits me on the other side is almost too unbearable to embrace just yet.  Don’t get me wrong, I yearn for the fatigue, pain, neuropathy, malaise, and hairless head to be in my rearview mirror, but it’s hard to fathom the idea of surgery . . . that which will permanently change me.  Forever.

I recall the goose bumps I got over those surreal cliffs in Santorini.  Truthfully, those goose bumps never came while looking down at the “tiny” wonders more than thee football field lengths away at the bottom.  Instead, they came when we were at the bottom—looking up.

The view from below always took my breath away.

Right now I stand somewhere at the base of my cliff in this cancer journey, longing for that destination on high.  Why aren’t I looking up?  Only here can I really see the hope and future blessing stretched out before me, the surreal beauty that might even take my breath away . . . if I let it.

Who hopes for what they already have?  But if we hope for what we do not yet have, we wait for it patiently.  (Romans 8:25)

Love,

Nicole

xoxo

Nina Speaks . . . and I’m Feeling Good

Nina-Simone

(originally posted on CaringBridge on 1/28/13)

Birds flyin’ high you know how I feel . . . Sun in the sky you know how I feel . . . Breeze driftin’ by you know how I feel—It’s a new dawn, it’s a new day, it’s a new life for me, and I’m feeling good.

~ Nina Simone

Feeling Good is one of those cool songs that when you’re feeling really bad, it’s got medicinal properties to pick you up and when you’re feeling really good, it lifts you up higher.  Nina Simone always executes that powerful cry for freedom in her music that just shouts . . . Whatever this world throws at me I am still blessed and refreshed because this world can’t take away my inner freedom.

This week marks week 4 of chemotherapy . . . only 16 more weeks to go.  There was actually a faint, initial excitement typing the word only until I looked at it a second time . . . then suddenly my mental energy was completely focused on the word – more.  The focus shifted to:  “What?  16 MORE weeks to go?  Seriously?”  In truth, this is the easy part of the journey, so I will stick with my optimistic sing-songy attitude “YAY, only 16 more weeks of chemo!”   Actually, let’s scratch sing-songy and go with raspy-jazzy-Nina-Simoney.  I’m Feeling GOOD.

In terms of side effects—overall, my body has done very well so far.  I have heard horror stories and read of people who really fight a brutal battle with the nasty side effects of these life-saving poisons.  Therefore, I try not to focus too much on my trivial physical “ailments”— as I’m aware it could be so much worse.  In short, I have had moments of extreme fatigue and many more moments of abdominal pain and malaise, but no signs (yet) of neuropathy in my fingers and toes which I’ve been instructed to “expect”—a numbness and tingling that often makes certain tasks more difficult.  As for my hair situation, my scalp has become very tender, sort of like that feeling I used to get as a little girl when wearing my hair in a ponytail all day—once that elastic came out at the end of the day, it was sore and tender to the touch.   This sensation, so I’ve been told, is the forboding of hair on its way out.  It has been gradually thinning a bit . . . mostly showing up in the shower, but nothing unmanageable or overtly noticeable.  I’ll know when it’s time to shave the head, and will make no bones about embracing the buzzer when the moment does present itself.

Another newer, more pronounced side effect I’ve had going on . . . joint pain.  I know people who struggle and suffer with debilitating forms of joint pain, including Fibromyalgia and rheumatoid arthritis.  My heart breaks for those living with thisdaily and I truly sympathize—what must be torturous day in and day out.  Now I’m not suddenly claiming to be an expert in pain by any means, but feel there is a tiny part of me that can trade my sympathy for literal empathy.  Though I have not walked a mile in the shoes of people in chronic pain, this past week I’ve experienced a noticeable, constant sense of joint pain.  One night, mid-sleep, it came out of nowhere and almost felt like there was a little sledgehammer banging by bones from my shoulders down to my feet—a little demolition taking place throughout my body.  The thought of people living with this constantly, makes my life look like a walk in the park on a perfect day.

Saturday marked exactly one month since my official diagnosis.  If I sit on that thought too long, recalling that day . . . it’s quite possible that the neuropathy I spoke of may actually be starting in my brain—a numbing sensation that still grazes that fine line between fiction and reality.  Is this all just a dream?  Unfortunately the answer would be a flat out:  No.  But fortunately, I know my summer’s on its way.  John Steinbeck wrote it perfectly in his book, Travels with Charley:  “What good is the warmth of summer, without the cold of winter to give it sweetness.”

In the meantime, during my cold days of winter, I can say like the Psalmist, David who trusted God beyond anything else . . .

Your righteousness, God, reaches to the heavens, you who have done great things.  Who is like you, God?  Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. (Psalm 71:19-20)

Waiting to Shine in the Break of Dawn

Dawn

(originally posted on my CaringBridge page on 1/10/13)

However long the night, the dawn will break.

So I’ll lay out the first news of the day:  I am not receiving the clinical trial drug that would have worked in synergy with the standard chemo.   Yes I know… deep sigh. Cringe.  Let’s just say, if I was a gal who actually believed in luck (which I’m not) … it would be tough waking up each day without getting struck by lightning through my bedroom window!

Though we have been actively hoping and praying that I would hear different news today, I honestly have peace right now.

After the biopsy, as John and I made our way to meet with the oncologist and research team (to learn my status following computer randomization), I looked at him and said … the truth is, I tell myself I have been praying for God’s will be done, but my prayers and desire on this issue have really only been to GET the drug.  I need and really want His will to be done in this.  Believing means knowing that His way is best — period.  So these results really don’t matter, in His grand scheme.  So we both individually prayed for this the entire time we waited.

The oncologist called us in and we were still waiting on the research nurse to join us with results.  We talked about what to expect with my first infusion while she thoroughly examined me.  I’m thrilled to have her on my team.  The research nurse came in and after introductions, I couldn’t help myself.  “So?… was I picked in the randomization?”   She opened the chart (already knowing, of course) and almost sympathetically said, “No, you are in ‘Arm B’ of the trial, a participant in the smaller percent who DON’T get the drug.”  I paused, smiled and said, okay, we knew that was an obvious possibility.

The oncologist looked at me and assured me that this news does not negate the fact that I will be getting the best, most aggressive treatment…further reminding me that this trial may prove to not be effective at all.   I nodded, grateful for her encouragement and then glanced over at John’s face.  When you’ve been best friends with someone as long as we have (almost 19 years), you can’t help but feel what the other is feeling.  He hurt for me.  I then glanced again at the research nurse … silent and sympathetic, and cried for a minute.  Honestly, it was just that … a moment of releasing the coveted desire I carried for the last week and then just like that, relaxed, feeling a real peace that passes all understanding.  It wasn’t meant to be for me.

The oncologist left, as we continued chemo discussion with the nurse.  We then learned the bad news of the day—the trial stipulations did not clearly lay out the hidden fact that the next biopsy needed to be scheduled within 48 hours!  There I sat, ice in my bra, still black and yellow from the biopsy on the 21st of Dec.  Now further swollen and achy, they’re telling me I need to do this again in 2 days.  Let’s just say John in “protective-mode” was NOT a happy camper.  This really wasn’t clearly discussed nor written anywhere in the paperwork I signed, so we expressed our concern and overall disappointment with the added inconvenience and general misery this would bring.   After all, Thursday’s trial conversation had instead confirmed 2 weeks after my first infusion, the obligated biopsy needed to be done.

Anyway, John needed to chill out and I said let’s just deal with it and move on.  The nurse felt bad and wanted to further investigate.  Needless to say, while grabbing breakfast in the cafeteria, my oncologist frantically found us and said she was so upset at the vague details of the trial, that she formally complained, and pushed the biopsy off until next week (giving me a little extra time to heal).  Yay.

I also LOVE my chemo nurse.  We really connected! He’s great … fun, yet serious and filled with knowledge and answers.  He will hopefully be my guy for the duration.  John and I were happy with his attentiveness and compassion.

I pretty much avoided thinking about chemo until he hung the bag and was ready to start.  I already had a double dose of Benadryl via IV (which had a “burn-a- hole in my vein” feeling, apparently a normal sensation for many).  This was given in case I was one of the “anaphylactic shock” cases (lightning striking).

When the taxol was ready, I got an overwhelming feeling of anxiety.  I didn’t anticipate that reaction at all.  I think for a brief moment in Benadryl groggyville, I became that “gal believing in luck” and given the recent life events, assumed I would be the rare one to code on this drug.

Ahhhh, but no.  I am not that gal and the treatment went well, as I caught a long overdue nap with a lovely heated blanket.  It did its thing, and the nurse gave me a thumbs up and wink at how well I did.

Treatment one:  Done.

Help me, dear God to remember that challenges and heartache are perfect opportunities for my hope in you to shine . . .